How should costs fit into the conversation about end-of-life care?

Diane Meier just tweeted: "60 minutes misses the point- palliative care is about matching treatment to patient goals, NOT stopping it."

The central question raised by the 60 minute episode and subsequent discussion: how should costs fit into the conversation about end-of-life care? Various positions:

1. We should focus on reducing costs at the end of life. Costs of care at the end of life are outrageously high. We should limit spending on "unnecessary" expenditures that do little to prolong life. As a side effect, we will reduce suffering.

2. We should focus on reducing suffering. Many of the life-prolonging interventions at the end of life (e.g. mechanical ventilation, ICU stays, ED visits) cause suffering. As a side effect of reducing suffering, we will reduce costs.

3. We should focus on informed choices: matching patients care to their goals and values. Many patients do not realize alternatives exist to high intensity life-prolonging care, such as care focused on maximizing quality of life. If more patients were informed, more people would opt for care focused on quality rather than quantity of life. As secondary effects, greater emphasis on informed decision making would reduce costs and suffering.

Costs are central to the argument in position 1. Reduced costs are ancillary benefits to positions 2 and 3. These are not necessarily mutually exclusive positions. Someone could argue that the three goals of reduced costs, reduced suffering, and promoting patient choice are equally important. That said, each argument has a different policy implication. For example, an argument based on costs leads to a policy of rationing. An argument based on promoting informed choices leads to funding for advance care planning (I like this term better than “end-of-life” counseling).

Furthermore, each argument arises from a different ethical principle, and there may be reasons for arguing that one principle should take precedence over the other. The argument for reducing costs arises from the ethical principle of justice. By paying such high costs at the end of life, we reduce our ability as a society to pay for other potentially beneficial treatments. For example, if even half of the $50 billion dollars (number from 60 minutes) spent on care in the last month of life were spent on reducing social determinants of disease (e.g. smoking and obesity), this money could conceivably lead to a tremendous improvement in the overall health of our society. More realistically, if we do not contain spiraling costs, we will not be able to pay for other needed government programs, like schools. The central challenge to this issue is that rationing must be accomplished on a societal/political level, not the bedside, yet well publicized personal stories of denied coverage often trump reasoned arguments in social/political debate.

The argument for reducing suffering arises from the ethical principle of beneficence and nonmaleficence. Health care systems and individual providers should refrain from providing care that is known to be ineffective or cause harm. The challenge here is that what constitutes “suffering” or “quality of life” is highly subjective. Older adults who survived ICU admissions rate their quality of life higher than their family members do. Making judgments at a physician or even health policy level about what constitutes “suffering” smacks of paternalism, and many will be uncomfortable with this argument.

The argument for promoting informed decision making arises from the principle of respect for patient autonomy. Patients have a right to be informed of the potential for suffering with high intensity life-prolonging care, limited potential life-prolonging benefit, and alternatives such as care that focuses to a greater extent on quality of life. The challenge here is that while patients have an established right to refuse unwanted treatments (a negative right), some patients claim the positive right to receive specific drugs or interventions. In part, this has led some (such as Andy Billings) to say that “autonomy [has] run amok.”

If I have to take a stand on what I see as an essentially normative ethical issue, I would argue that promoting informed patient choices should be the objective of the palliative care community (one could make a similar argument about the geriatrics community). While reducing costs and reducing suffering are laudable goals, for both ethical and pragmatic reasons, they are unlikely to be successful in today’s political climate.

I also believe that these issues are inextricably intertwined. How we (we meaning the palliative care community in this case) promote ourselves and address the cost issue depends on our audience. Hospitals and health systems see palliative care clinicians as cost reducers and referring providers see us as reducers of suffering. Costs savings mean little to referring providers, and reducing suffering means little to health systems (I’ve heard Diane Meier say of reduced suffering as a goal in and of itself, "that and 50 cents will get you a cup of coffee”). We need to demonstrate cost savings to grow outside of the inpatient and hospice settings. We need to demonstrate reduced suffering so providers will refer patients to us. And for ourselves, for our patients and their families, we need to say honestly that we are helping them navigate serious illness with the goal of promoting their best interests.

Thanks to Barbara Brown for her excellent post and stimulating discussion that lead to this post. I also recommend reading this seminal article about the high costs of care at the end of life; I re-read it recently and found it fascinating and thoughtfully written. Finally, thanks to Bernie Lo for his book Resolving Ethical Dilemmas, which I used today as a reference.